RPP-Alpha-1 Global EU Advocacy Webinar

18.30-20.00 31 January 2018

Webinar structure

Introduction Sneak peek on EU public health key actors & decision making processes STEP 1 identify your top political asks & long-term strategy STEP 2 map the policy-makers STEP 3 connect with your policy-makers STEP 4 go live! STEP 5 celebrate European Alpha-1 Awareness Day Q&A

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INTRODUCTION Who is RPP and its contribution to the launch of the

Alpha-1 Expert Group Recommendations

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RPP Group: A true European Firm

• RPP Group is a consultancy focused on policy creation and development, building on our integrated services such as digital campaigning and visual communications.

• RPP Healthcare is a member of the RPP Group. Our topical focus and expertise are in healthcare, well-being, nutrition, R&D, innovation, market access & reimbursement, trade, and internal market policy.

• RPP Healthcare offers Public Affairs Services in various European Countries and on EU Level.

RPP Group offices and services: • Brussels (HQ) – EU Public Affairs Services and Belgian

Public Affairs Services • Berlin – Germany Public Affairs Services • London – UK Public Affairs Services • Paris – France Public Affairs Services • Rome – Italy Public Affairs Services • Hamburg – RPP Visual Communications

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Introduction RPP Contribution to EU Rare Disease Space

Legislative Credentials: 1. Worked with EC on inserting Rare Disease definition in Cross Border Healthcare

Directive 2. Worked to insert the ‘ultra-rare’ definition in the Clinical Trials Regulation 3. Developed the term ‘treatable rare diseases’

Stakeholder Credentials 1. Represented Patient Groups covering 400+ Rare Disorders

– Rare Bleeding Disorders, PID’s, AATD, Rare Cancers, Childhood Dementia etc.

Impact on Policy 1. Rare Disease Plan Implementation work (Sweden, Denmark, Belgium,

Germany) 2. National campaigns pushing for implementation for Newborn screening for SCID 3. Patient Training (Ireland, UK, etc.) 4. Reimbursement in Lithuania

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Alpha-1 Expert Group Recommendations 2017

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What do we want to achieve?

Empowered Alpha-1 community

Increased awareness on Alpha-1

Increased funding opportunities for Alpha-1 research

Reduced inequalities in Alpha-1 diagnosis, treatment and care

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Next Step: European Alpha-1 Awareness Day

On April 23/24 2018 the European Alpha-1 Awareness Day will be celebrated for the first time with the aim to raise awareness on the condition and call on the policy makers to implement the Recommendations developed by the European Alpha-1 Expert Group.

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How the EU works and how it can help you to drive a change on a national level?

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Competences in public health

ensuring that all EU policies and actions provide a high level of health protection

assisting Member States to coordinate their action and collaborate on health

joint action with member states on 'threats to health' particularly where there is a cross border dimension

standard setting and regulation in specific areas such as pharmaceuticals, medical devices, blood products, organs for transplantation

EU National level Financing, organising,

managing and running health services

Reimbursement decisions

Post-2020: the EU might setting up of a legal framework for EU cooperation on HTA

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EU Institutions role in public health

ENVI

DG SANTE DG RESEARCH EMA

Working Groups Health Platform

EPSCO

Interest Groups

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European Parliament

The only directly elected EU body, this represents the EU’s 500 million inhabitants. It is a key institution to engage with to drive a change at the national level through the EU

Structure of the European Parliament

Number of seat per Member State (total 751)

STEP 1: Identify your top political asks & long-term strategy

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STEP 1 identify your top political asks & long-term strategy

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Understand the environment

Do you have treatment in your country?

Yes No

Is it reimbursed?

Yes No

Do you have country-specific data? Add it to your message!

Payers must consider the number of “rapid decliners” that would receive augmentation therapy rather than the whole patient population when assessing cost-

benefit.

Country X should develop an Alpha-1 diagnosis programme as part of the rare disease plan and ensure that guidelines for related diseases such as COPD and liver cirrhosis include mandatory

tests for Alpha-1.

Alpha-1 is the only form of COPD with specific treatment proved to reduce the

rate of lung decline and improve survival of patients. Hence it should be

made available for all patients who need it.

Practical task: fill in the table in your checklist STEP 1 identify your top political asks & long-term strategy

Key issues in my country

2018 asks

Strategic goal

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5 min

STEP 2: MAP THE POLICY MAKERS

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STEP 2 map the policy-makers

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Identify active politicians in health at the national level • find out who is responsible for rare disease policies: Parliament, Ministry of Health,

Medicines Agency etc). • If you find there is no dedicated department/committee in your country, map politicians

active on general public health policies

A tip for finding out relevant stakeholders: check whether your country has a rare disease plan, who is responsible for its implementation, who is active in related

debates

STEP 2 map the policy-makers

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Find out who represents your interests at the

European Parliament! A tip: look particularly for those MEPs working in the Committee on Environment, Public health and Food Safety (ENVI) -> check which political group your MEP belongs to (EPP, S&D are the biggest groups in the Parliament)

You are from Bulgaria, Austria, or Romania? These countries have the forthcoming EU Council Presidencies – urge your government to put Alpha-1 and rare diseases on the agenda.

Practical task: fill in the table in your checklist STEP 2 map the policy-makers

National representatives

Members of the European Parliament

Other

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5 min

STEP 3: CONNECT WITH YOUR POLICY MAKERS

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STEP 3 connect with your policy-makers

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Connect with your identified policy-makers on Social Media (Twitter, Facebook, LinkedIn). Post your developed political asks, recommendations and photos on social media and don’t forget to tag them!

Example of a tweet

Tag relevant organisations/people

Post a picture – it attracts more

attention

Tag up to 10 organisations/people

on the picture

STEP 3 connect with your policy-makers

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Before the meeting Find out when and how you can meet you MP/MEP. All Members of the European

Parliament have national offices; so, you don’t need to come to Brussels to meet them)

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Book the meeting (don’t take no as an answer) ☐

Do your research. Find out what issues your MP/MEP cares about and whether he or she has an active interest in health policies

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Know what you want to discuss: take with you the recommendations and key messages to explain why this is important

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Practice speaking: develop a brief for 2-3 minutes to quickly and powerfully introduce your issue to your policy maker

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During the meeting

Share your story: facts and figures are important but telling your personal story and showing your commitment is a powerful way to make yourself heard

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Be concise: present your case in laconic but engaging way, including an explanation of the issues you are experiencing and your political asks

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Make clear and specific requests: having concrete asks to your policy-maker is the best way to encourage a political reply to your issue. Also let your policy maker know about Alpha-1 Awareness Day, ask them to support it.

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After the meeting

Send a thank you email along with a short summary of your key asks and materials ☐

Follow up: keep your policy-maker posted on the developments and have a follow-up meeting to maintain a relationship

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Share your success: post an article about the meeting on your website or newsletter, have a social media post thanking your policy-maker for support

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STEP 4: GO LIVE

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STEP 4 go live!

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If you don’t have a Facebook or Twitter account, consider creating one

Post recommendations on your website

If you have Facebook or Twitter account, you can:

• spread your message! • disseminate the Alpha-1 European Recommendations • share messages provided by Alpha-1 Global ahead of European Alpha-1

Awareness Day • share MEPs video messages developed ahead of EU Alpha-1 Awareness

Day • Follow Alpha-1 Global on Twitter: @Alpha1_Global, @Alpha1_EPevent • Retweet tweets @Alpha1_Global to help us spread the word.

Tell your story on Alpha-1 Global Blog: www.facebook.com/groups/A1Gleadershipblog/

Practical task: fill in the table in your checklist STEP 4 go live!

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Social media plan

February

March

April

5 min

STEP 5: CELEBRATE ALPHA-1 AWARENESS DAY

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STEP 5 celebrate European Alpha-1 Awareness Day

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Celebrate online

• Share Alpha-1 Global messages • Use a banner developed for your country • Share a developed video message from your MEP • Write an article to a local newspaper/news portal about

Alpha-1 Awareness Day

STEP 5 celebrate European Alpha-1 Awareness Day

Have a community event in April 2018

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Example of an event at the national parliament

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Based on European call for SCID newborn screening, the Spanish NMO organized, in collaboration with RPP, an event in the Congress in Madrid to call for national SCID newborn screening

• MEP-MP connection • National asks and

strategy • Event • Press engagement • Social Media Presence • Alliance with other

NGOs • Advocacy follow up

Tips for organising a community event

• Short meetings are best - half-day or less. If having policy makers or professionals is key to your meeting, find out their schedules before you fix the date, time and length of the meeting. If you hold a day-long meeting, policy makers may only be able to attend for part of the day.

• Focus on your audience’s needs. State the audience benefit for the event in your promotional

materials and introductory welcome on the day. Why is this meeting, and your work, important for them? Focus on your key message and whatever background information your audience needs.

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• A meeting should be a dialogue. Give stakeholders the chance to react, raise their concerns and provide their perspectives. A workshop format (rather than presentations) provides time for more interaction, although a briefing format may be suitable for shorter, smaller meetings (e.g., lunchtime seminars).

• Take appropriate printed materials. Use printed materials during your event, including Alpha-1 Recommendations (include a one-page summary on top).

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For other comments and questions please contact Dr. Frank Willersinn

Alpha-1 Plus Belgium alpha1plus@yahoo.be

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